As part of our mission to expand knowledge and advance care for the NF community, click here for a collection of recent webinars on a variety of topics hosted by the Children’s Tumor Foundation.
This webinar was recorded live on Friday, May 22nd (World NF2 Awareness Day) to discuss challenges and choices in treatment options for NF2 and schwannomatosis patients. To enable Closed Captioning, click the CC button. Speakers:
– Simon Vukelj, Chief Marketing Officer, Children’s Tumor Foundation
– Annette Bakker, PhD, President, Children’s Tumor Foundation
– Billy Nguyen, MD, University of California, San Diego
– Alan Belzberg, MD, George J Heuer Professor of Neurosurgery Johns Hopkins School of Medicine/ Hospital
– Rosalie Ferner, MD, Professor of Neurology, Guys and St. Thomas’s Hospital Department of Clinical Neuroscience, King’s College London
– Michel Kalamarides, MD, PhD, Professor of Neurosurgery L’hôpital de la Pitié Salpêtrière (Paris) NF2 et Schwannomatose
– PhiOanh “Leia” NghiemPhu, MD, Associate Professor / Vice Chair Academic Affairs, Dept. of Neurology, Director, Neuro-Oncology Fellowship Program UCLA David Geffen School of Medicine
The Children’s Tumor Foundation presented this webinar on the opportunities and challenges in gene therapy in neurofibromatosis, or NF. This webinar was recorded live on May 12, 2020 and included the following speakers:
– Peter Marks, MD, PhD, Director, Center for Biologics Evaluation and Research (CBER) @U.S. Food and Drug Administration (FDA)
– Scott Plotkin, MD, PhD, Massachusetts General Hospital and Chair, CTF Clinical Advisory Board
– Peggy Wallace, PhD, University of Florida College of Medicine and Past Chair, CTF Research Advisory Board
– Annette Bakker, PhD, President, Children’s Tumor Foundation
– Simon Vukelj, Chief Marketing Officer, Children’s Tumor Foundation
In this Children’s Tumor Foundation webinar, Clinical Psychologist Ethan G, Lester, PhD gives practical resiliency skills to help patients and caregivers living with neurofibromatosis (NF) especially during the coronavirus pandemic.
On Monday, April 13, 2020, the NF Community came together via Zoom webinar to ‘Sel-u-brate’ the announcement of the FDA approval of selumetinib, or Koselugo, the first approved treatment for the rare disease neurofibromatosis. Koselugo is now approved for NF1 patients with inoperable plexiform neurofibromas, and this approval opens the door to future approvals for the other forms of NF, NF2 and schwannomatosis. Researchers and NF Experts speaking in this live Zoom webinar include:
Annette Bakker, PhD, President of the Children’s Tumor Foundation (CTF)
Rick Horvitz, CTF Board of Directors Chair
Tracy Galloway, CTF Board Member
Brigitte Widemann, MD, Principal Investigator of the selumetinib clinical trial
Andrea Gross, MD, NF Researcher
Jaishri Blakely, MD, NF Researcher
Simon Vukelj, Chief Marketing Officer (CTF)
Many NF patients and other members of the NF community also joined to ‘selu-brate’ and provided their reflections on the news. To learn more about this drug approval, read patient stories, and hear the history of this progress, go to ctf.org/mek
Grab your pencils and join the Children’s Tumor Foundation and the team from Bottled Lightning to learn to draw superheroes! In this webinar, professional comic book artist Steve Ellis goes step by step through the process of drawing CTF mascots Moxie & Sparx, and the Accelerator.
In the midst of COVID-19 outbreak, the NF Community came together for a live global video chat on Friday, March 20, 2020. After an introduction from CTF President Annette Bakker, PhD, NF experts Bruce Korf, MD, PhD, and Scott Plotkin, MD, PhD, answered questions about the coronavirus and its impact on patients with neurofibromatosis, and educational experts from within the community offered tips and resources to parents of children with NF who are home from school.
To view more webinars and videos from the Children’s Tumor Foundation, please visit our YouTube channel at www.youtube.com/childrenstumor.
